Checking submitted uncertainties
The uncertainties submitted by patients and clinicians need to be checked to ensure they are true uncertainties because some uncertainties may have already been addressed by research without all patients or clinicians knowing. True uncertainties can then be entered into UK DUETs and prioritised.
Priority Setting Partnerships will already have agreed and noted in their Protocol
who will be responsible for this phase. Treatment uncertainties identified in the research recommendations can go straight into UK DUETs.
This is because their inclusion in the research recommendations indicates that they are confirmed uncertainties. These may include the existing body of Cochrane reviews, NICE guidelines, SIGN clinical guidelines or the UK Clinical Trials Gateway. Uncertainties submitted by patients and clinicians which are true uncertainties are identified after checking them against existing systematic reviews.
Duplicates can be combined, but their frequency should be recorded, as this may influence prioritisation. Frequency is dependent on the number of times one uncertainty is submitted by a particular participant group, such as patients, carers or clinicians. A prevalence of an uncertainty also needs to be noted - this is the number of times the submission has been made across participant groups, or multiple organisations submitting the same uncertainty, or multiple submissions of the same uncertainty from one organisation. It is important that source information is logged and reviewed as priority setting commences.
Other ineligible submissions must be removed, such as those which
contain no defined treatment, and therefore no clearly defined treatment
Sometimes, uncertainties are expressed that can in fact be resolved with reference to existing research evidence - ie they are "unrecognised knowns" and not uncertainties. If a question about treatment effects can be answered with existing information but this is not known, it suggests that information is not being communicated effectively to those who need it. Accordingly, the JLA recommends strongly that Partnerships keep a record of these 'answerable questions' and deal with them separately from the 'true uncertainties' considered during the research priority setting process. We suggest incorporating this commitment in the Partnership’s Protocol.
Click here for examples from JLA Priority Setting Partnership.
Within the urinary incontinence
priority-setting process, a total of
519 uncertainties were gathered of which 102 came from existing sources
and 417 were submitted by partner organisations which had gathered them
internally and from their members.
These were refined to remove duplicates and non-uncertainties, leaving a total of 226. Of these:
79 came solely from patients and carers
37 came solely from clinicians
six were submitted by patients and clinicians simultaneously
two were from patients and research recommendations
102 were derived solely from research recommendations
For the type 1 diabetes priority setting process:
- 583 people submitted 1141 uncertainties
- 890 were true uncertainties
- 118 uncertainties came from research reccs/literature
- Combining duplicates, there were 350 verified uncertainties